The Old North Bridge

It was an abnormally warm December day today, around the 50s, I'd guess. No snow, sad for my Natalia, but a perfect day to explore the Old North Bridge in Concord. 

I wonder if there are any ghosts wandering the fields of the Old North Bridge? Even though the temps were rising, there was still the echo of a winter chill in the air, enough to bite the cheeks as we walked  over the paths that the colonial minutemen must have taken on that terrible day in April oh those many years ago. 

It was nice to get out of the house to walk off our heavy post-holiday meals. I'm so very happy to have my mother and father visiting with me. These holidays are so, so hard without my sister. Sometimes, I feel as if laughter was far way, on a different planet even. When my parents visit, it returns, and I can laugh long and loud. Laughter that is deep, that fills the room and echoes throughout the house. 

It was also good to get out for a bit as I've been staying cooped up playing through Jonathan Boakes terrifically spooky Dark Fall games. I've been creeped out, of course, but also inspired to explore the history-soaked places that I live so close to. I had so much fun playing around with filters for the photos that I took on my very old iPhone. I hope to get better with time.

Season of Memories

I seem to only write in this blog around the holidays. Perhaps it's because it's during these times, which should be so happy and filled with joy, that memories, both dark and light, spring to mind. Today was a long and lazy day. Fat snowflakes fell soft and cold only to melt as soon as they touched ground. I spent most of the day cleaning and wrapping presents. It's a day that I should have gone with Mike to his family Christmas party, but I just couldn't bring myself to go. I miss my sister so much during these times, it takes my breath away, and I'm forever on the verge of crying.

When we were younger, there was an intensity to our anticipation for this holiday -- we would call the time; we'd pick up the phone to call an automated voice speaking out the hour to the minute. At our house, we got to wake up at midnight to open up not just one, but all of our presents. It felt so decadent, to be up so late, and so joyous. The minute that voice said midnight, together, Julie and I would bound out of our room and race to rip the wrapping paper off of our presents. There we would sit satisfied and happy amid curls of festive paper and torn up cardboard.

Ah, Julie. You would have loved the holiday season in New England. The sky today was thick and gray and heavy as it released it's fat flakes. I walked outside to feel the crisp air on my skin, only to feel my cheeks tingle when I got back into my warm, snug house. Lights and decorations on the houses here make so much more sense, as they twinkle and warm up the cold dark winter evenings.

The Holidays

The holidays are over. My first without Julie. Julie. I haven’t said your name in a very long time. It’s a short word, happy, ending on a joyous long ee sound rather than the more somber ah sound that most feminine names end with. I miss you Julie. Right now I’m listening to the fifth movement of Francois Poulenc’s Gloria. I was introduced to this by church – it’s such a glorious set of music.

Poulenc, or so the musical director said, was a conflicted Catholic. He was gay and of course moved away from a religion that did not accept him. But after a crisis, he returned to the faith. It’s said that the inspiration for his Gloria was Poulenc watching monks playing soccer – that interplay of the playful and the sacred which finds such a glorious expression in his Gloria. I love the playfulness of the second movement that opens with brasses blaring in off-kilter bursts introducing the buoyant Laudaumus te of the chorus. Followed by that, I love the sixth movement that opens with the chorus in full . . . Qui Sedes . . .which builds to an overwhelming crescendo and then, and then, the sweet lyrical solo female voice singing Amen. Glorious.

 Ah, Julie. I wonder if you would have loved this music as much as I do. Perhaps. Regardless, it reminds me of you. Full of almost sacrilegious jocundity and pinned through the middle with a piercingly sweet sadness. So, to get back to that horrific journey. I should have heard it in her husband’s voice, in the way his voice broke and he cried. But I was in deep denial when he said she may have 2 years or 10, we just don’t know. I wanted to believe she would have 20. Time enough for us to do our sister trips, our jaunts to Europe together. Time enough to watch our children grow up and have lives of their own.

 And so she began her first round of chemo. We thought that chemo was, or I thought anyway, something you did to beat cancer. We all thought she was young and strong; she could handle the poisoned chemo and that it would beat her cancer, kick it in the ass. We didn’t know then that she didn’t have a chance and that her strength and youth would make her dying so much more painful and drawn out. I believe that I went to visit her in October of that year (2010). She was starting to lose her hair and the oncologist had put a port catheter into her chest – this ugly wound still healing, protruding from her chest. How awful. How awful.

It’s funny, I remember her being so self conscious about a birth mark she had on her arm earlier in her life, but she made nothing of the port cath. It was a way to inject the chemo drugs directly into her bloodstream for hours at a time. But I was self-conscious in her place. I hated how people at stores stared at her, stared at her because she had lost her hair and had this thing sticking out of her chest. I hated them. Why should they recoil from her? She was my loving sister, funny, kind. It’s one of the experiences that has changed my life. At work, people will passively aggressively make noises about people who take the elevator to the second floor. But, you know, you never know what things people are struggling with. You never do. Why not give them the benefit of the doubt? How can you judge them when you don’t know?

 On my first trip, I went with her to her chemo treatments. The nurses were so sweet to Julie, and Julie, my god, the strength she had. As they filled her body with toxins to kill the cancer, she was so strong. She was still walking around at this point, and she and I would go out for coffee, but she was starting to get easily fatigued. After I returned, she posted good news on Facebook. The tumors had shrunk – the chemo was working! She took pictures of herself at the MD Anderson Cancer Center Survivor’s plaza, and I thought, yes, my sister would be a cancer survivor! But. But. But, this was the sunlight before the storm.

Long Months Of Traveling

Yesterday was Thanksgiving. My first without my sister.

We loved this holiday; it was a time for my dad’s famous turkey (he cooked it low and slow for 10 hours and the smell of roasting meat filled the house starting in the wee hours of the morning); the wonderful smells of Thanksgiving began the day before, when my mom would pop store-bought pumpkin, cherry, and apple pie into the oven. While we always had mashed potatoes, we also always had white rice – ah the joys of rice smothered in creamy gravy; my sister and I loved the day after Thanksgiving almost as much as the day of: We’d indulge in pie for breakfast and eat gravy, rice, stuffing, and turkey all day.

The Thanksgivings my sister and I had without my family all blur together into warm happy memories for me. I remember a particularly crazy Thanksgiving in Berkeley. We had invited friends over who couldn’t make the trip home for the holiday. My sister was a giant ball of excitement at getting to make the turkey. We started early. Unfortunately the turkey hadn’t quite thawed out all the way, and we called my dad in a panic – my sister’s arm had gotten stuck in the turkey as she tried to remove the giblets! Yes, we did manage to extricate her arm and the giblets intact, thank goodness. I’d had my own disaster that day, as I’d tried to make low-fat macaroni and cheese with non-fat milk and cheese – oh the sacrilege! Our friends politely took small bites and grimaced only the tiniest of bits as they crunched into the dried out macaroni.

As our lives moved on, traveling home for Thanksgiving was a welcome ritual, where I got to see my darling sister and her growing family.

When we had the final diagnosis and staging, my sister began her first round of chemotherapy, and so began my bouts of traveling to Albuquerque, both alone and with my family. Like my Thanksgiving memories, though for an entirely different reason, these rounds of travel blur into one messy group of memories for me. I remember those first trips feeling hopeful; chemo was what you underwent to beat cancer. My sister was young, strong, and except for the cancer, otherwise healthy. This would allow her to handle the strongest of protocols. With hindsight, I wonder now if this was the best route. If she had terminal cancer, should we have tried to make those last six months as comfortable and pain-free as possible? I believe the chemo gave us an additional half year, but the treatments were torture for my sister, though she never let on about what she was going through. I don’t know the answer to these questions – I cherish the extra time that I had with my sister, and I despised the pain and agony she went through. Someone told me that in times of extremely duress like this, there are no right and wrong choices, only difficult ones. I truly believe that. At each fork in the road, we agonized over which direction to go in, but in retrospect, all we can do is continue traveling down the path no matter what direction we ultimately choose to take.

However brief a time I spent on this earth with my sister, I am forever thankful that she was a part of my life. I spent one last wonderful Thanksgiving with her (we celebrated early during my trip last October), where we ate traditional turkey, but also her favorites: pork adobo, lumpia, and pancit. Her kindness, laughter, love, and intensity forever changed my life for the better. Thank you, my sister, I am thankful for your presence, and the love that you always gave to me.

Terminally Restless

As I spent the final weeks of my sister's life with her, I'd often find myself trawling the web, trying to find any information I could about why she couldn't sleep, why she couldn't get comfortable, how I could help her, what information I could pass along to her hospice nurses that could possibly help her. She was young, in her early thirties, and she was dying from stomach cancer.

At the time, I could find nothing, nothing that seemed even remotely close to her situation. Hospice pages, forums, blog posts, they all dealt with someone at the end of a long life. Everyone seemed to have found the right pain medication combination, sleep medication, you name it. But my sister couldn't sleep. Her youth, her strength, her vigor (all of which we thought would help her "beat" this thing) all worked against her finding comfort, finding peace. One of the hardest things we had to deal with as caregivers was an onset of this awful restlessness. As soon as the sun began to set, she would be wide awake. She would want to sleep, but couldn't get comfortable. At first, we were able to move her from her favorite recliner to her bed and back, but as she lost mobility, this became increasingly difficult. No amount of pillows, blankets, supports gave her comfort.

What was this? The hospice nurse didn't know. He thought we should give her more medication, and we did, but nothing worked. During my Internet searches, I had come across some talk of terminal restlessness, a few paragraphs describing how some terminal patients suddenly experienced severe agitation, a change in mood, an inability to get comfortable. But there were really no suggestions, no tips on how to deal with this.

It's been several months since my sister died, and I still find myself searching for answers about my journey through the valley of the shadow of death. Yesterday, I found a personal blog about a man and his experience with his wife's terminal restlessness. I don't know who this writer is, but I found comfort in his posts. His experience mirrored my own. I wish I had found this site earlier. This connection with a stranger's writing helps. I don't know why it does, but it helps. It has spurred me to create this blog. I had started an old fashioned journal, you know pen, paper, analog, hah. But this person's blog has been so helpful to me. There is nothing out there, nothing for what my sister and my family went through. It's not surprising; her cancer was rare. She was young. This doesn't happen to people like her. People we know don't get cancer, and if they do, they "beat" it. But when it does happen to someone you know, someone you love, you can find yourself searching, searching for any sign that others have gone through what you're going through.

Selfishly, I hope that this catharsis will help me. But I also hope that someone, someday, as they find that they've landed in the hellish landscape created by cancer, searching the Internet, late at night, looking for answers, for connection, for some hint that someone else is going through what they're going through finds some help in this blog as well.